Holden, Christine E., Elia, Marinos, Russell, Christine, Shaffer, John, Micklewright, Ann, Wood, Susanne, Wheatley, Caroline, Meadows, Nigel, Thomas, Adrian, Stratton, Rebecca and Scott, Douglas
Review of home paediatric parenteral nutrition in the UK
British Journal of Nursing, 10, (12), .
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Home parenteral nutrition (HPN) is an expensive technological development which has given life to children with chronic intestinal failure. However, HPN is a complex therapy which carries life-threatening risks. The British Artificial Nutrition Survey (BANS), launched in 1996, monitors and audits HPN in the UK. It is the largest ongoing survey in the world, reviewing patients receiving enteral and parenteral nutrition. Data collated from health professionals between June 1996 and September 1999 identified 81 children who were registered. The commonest diagnosis for starting HPN was short-bowel syndrome, with 41% of the children being under the age of 1 year. Readmission rates of children to hospital were reported as less than 2%, suggesting that most of the burden of care is placed on families. Questionnaire data received from families (response rate 38%) identified that sleep disturbance was common. Families also experience a deterioration in their family life. This relates to poor social life activities and overall quality of life after the child had started HPN. Further qualitative research data are required to review the ongoing psychosocial issues for families.
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